A new report from UK MPs stresses the importance of better urgent care resources for endometriosis, emphasising that wait times for care need to be cut in half
Women suffering from this debilitating disease have to suffer for an average of eight years before receiving an accurate diagnosis – this wait time has remained the same for longer than a decade.
Endometriosis is a chronic illness that causes womb tissue to grow in different parts of the body, particularly around organs, but in rare cases in the stomach, chest, and even brain. Each month, this womb tissue becomes inflamed and bleeds.
However, unlike womb tissue, it has nowhere to escape, and builds up, causing extreme pain, inflammation, and scar tissue. Some women have few symptoms, but for others it causes fatigue, painful intercourse, and intense agony. The scar tissue can also cause infertility.
Tracey Bambrough, co founder of IVFbabble experienced excruciating pain for almost 30 years before being diagnosed with endometriosis
“I would be in absolute agony for two days each month. Although I have a high pain threshold, this pain was sometimes so severe, I would feel as though I was going to faint. But I thought it was ‘normal’, that everyone experienced this especially as my mother had the same too. It was only following an ectopic pregnancy in my late 30s that my GP suggested I may well have endometriosis. Following three referrals to gynaecologists, incredibly it still wasn’t even considered and the pain put down to digestive issues and ‘wear and tear’! An appointment a while later with a fantastic fertility consultant, started with a scan to see if my fallopian tubes were blocked, which they were. Then this was followed by a laparoscopy and finally endometriosis was detected. Although the pain is still there, it helps to understand what it is and how I can manage it too. But 30 years to diagnose highlights just how little attention this debilitating disease is given! This has to change.”
One in 10 UK women suffer from this disease, yet it gets just a fraction of the attention and funding of illnesses that affect men
The disease negatively impacts a woman’s physical health, mental wellbeing, educational opportunities, and career, with many forced to exist on long-term disability benefits. Almost 90% of the 10,000 people who participated in the All-Party Political Group inquiry revealed that they were never offered any psychological support.
There is no cure for endometriosis, although hormone therapy can help with pain, as can surgeries to remove the offending tissue, as well as scar tissue
A full hysterectomy is a common treatment, although the womb-like tissue can continue to grow back even after this drastic measure.
Sufferer Sarah Smallbone gave evidence at the inquiry. She is now 37, but was diagnosed at 30. After four surgeries that have done little to alleviate her suffering, she is still in too much pain to return to work. “Endometriosis is life-changing. The pain can be so varied, but at its worst, it is crippling to the point that the strongest painkillers only seem to make me drowsy.”
“After several warnings for my sickness, the final straw was returning from surgery, which ended up causing me kidney failure, and being given an official disciplinary. Knowing that I still needed another operation to reverse my bowel, I felt I had no choice but to quit.”
Similarly, sufferer Helen-Marie Brewster has been plagued by pain through her teens and her entire adult life
“I failed most of my GCSEs because I was in bed, in crippling pain. I’ve lost nearly every job I’ve ever had because of my poor attendance.” She says she often has to educate GPs about her condition. “GPs ask me to explain to them what endometriosis is because they don’t know. They’re the ones who are meant to help. Last year I visited the A&E department 17 times trying to find help and pain relief for this condition, even for just a few days so I can keep going.”
The study also found that Black and minority women, as well as transgender men, face even longer wait times.
Minister for Women’s Health Nadine Dorries says that there is still a long way to go to raise awareness about endometriosis
“We have provided £2m, through the National Institute for Health Research, to investigate the effectiveness of surgery compared with non-surgical interventions to manage chronic pain in a specific type of endometriosis.
“Clinicians have a vital role in removing the stigma associated with endometriosis, and I would urge them to follow the NICE guidelines, and to do all they can to support the mental and physical health of those suffering from this condition.”
Do you suffer from endometriosis? Have you had a hard time accessing effective treatment? If you would like to share your thoughts and experiences we would love to hear from you at email@example.com